Looking for Pediatric Cancer Surviviors of All Ages....

ladiperk Member Posts: 3
edited March 2014 in Long-Term Survivors #1
Hello Everyone~
My name is Stacie and I am a pediatiric cancer survivior. At 16 I was diagnosed with Rhabdomayosarcoma and was given 6 months to live. Well it is now 17 years later and here I am. I have started this discussion topic because I would like to know your experieinces as a survivior.

I was hoping that you would be willing to share your story with me. Please tell me a little about yourself:
~the type of cancer you had
~the age you were diagnosed
~treatment you received
~where you received your treatment
~did your cancer reoccur?

I am looking for answers to questions such as...What is your age now? Do you deal with Late Effects or heatlh issues that just don't make sense? If so what are they and how are they treated? Do you or have you gone to a Survivors Clinic, if so where? How has your past illness effected your life as an adult? Have you been able to find adequate support both medically and emotionally? Are you able to access useful information about late effects of your treatment or the treatment you recieved as a child? If so where? Have you been able to find any type of support groups, if so what is the name and where?

I want to be clear that I am not a doctor, researcher, or anyone like that. I am a Survivor and I am interested in your story for the purpose of learning. I hope to help each and everyone of us in the near future to be able to get or lead us to the support that we look for both medically and emotionally.

If you do not feel comfortable shareing your entire story here, please feel free to email me at PediatricCancerSurvivors@gmail.com.

Thank you for taking the time to read this, and I hope to hear from you soon.


  • emmabeansmom
    emmabeansmom Member Posts: 3 Member
    side affects from chemo and Radiation
    hi.. I am a mom of a survivor of Rabdo.. she is 6 yrs out.. she was diagnosed at age 4 with stage 4..her tumor sat on her uterus and was all over her abdomine area... she was treated for two yrs.. did the national protocal.. she and her tumor was so responsive to her chemo and radiation.. we are now having side affect issues with her treatments and I am beyond scared... did you have any side affect issues with bone growth? as of right now we are not sure how many eggs she has.. and if she will have the correct amount of hormones for development.. she had screws put in her femurs b/c the balls of the bones were slipping off her growth plates.. Im so afraid she will never walk properly again and may need lifts on her shoes.. is there anyone out there with the same issues that can shed some light on this?
  • s-long
    s-long Member Posts: 1
    What was the treatment you received? My son has been treated for two years and the cancer keeps coming back in the lymph nodes. did vit c drips, and know it is in the aorta lymph node causing pain near his kidney. did you use radiation? where was your treatment done? s-long